3.2.2 Building independence
Understanding CF
All participants acknowledged that children need general disease
knowledge about CF to build their independence in self-management and
overall treatment adherence. Parents and HCPs highlighted the importance
of children understanding the rationale for completing treatments.
Parents explained that the lack of tangible reward for completing
treatments makes it difficult for children to understand the importance
of maintaining consistent treatment routines. Education surrounding the
long-term benefits of completing treatments was highlighted as being
important in motivating children to consistently self-manage their CF.
One challenging aspect of learning about CF reported was life
expectancy.
Parents and HCPs differed in their opinions on how much information
should be revealed to children about CF. Many parents described worrying
about how their child would find out about sensitive issues related to
having CF, such as disease prognosis. Parents emphasized the importance
of delivering this information in a developmentally appropriate way,
however they expressed uncertainty about what age is appropriate to
begin having these discussions. HCPs described how some parents limit
the amount of information they provide to children regarding life
expectancy to protect them. While the latter was interpreted as a
strategy employed to protect their children, HCPs perceived that
censoring information is unhelpful in the long-term.
Mechanisms of learning
Participants described how children learn to manage CF. Parents were
described as the primary source to help their children learn about CF
and how to manage it. Parents’ knowledge of treatments and openness to
encouraging their child to self-manage their CF was discussed as being
important in learning about CF and building independence. HCPs also
contribute to CF learning and discussed directing conversations toward
and obtaining information from children during CF clinics in order to
allow children to advocate for themselves. Using this strategy
encourages children to become more comfortable reporting their health
status independently, and allows them to clarify their beliefs and
feelings that may not be represented in their parents’ reports.
Increasing responsibility
Increasing the ownership of the child in self-managing their CF over
time was described by participants as critical. Parental beliefs were
identified as a factor that could prevent children from learning to be
independent in managing their own care. Parents and HCPs explained that
it can be difficult for parents to let go of control of managing their
child’s treatments. Some parents indicated that it can be more efficient
to complete a task for their child rather than watching them fail; other
parents highlighted the importance of letting their child fail as a
mechanism to facilitate independence. HCPs noted that having parents
solely complete treatments for their child may be detrimental to their
child’s ability to self-manage their CF in the future. Child
self-management of CF was believed to contribute to their overall
self-confidence.
Some children felt that the abundance of disease information and the
number of treatments required to complete when combined with other life
activities (e.g., school, friendships) can be overwhelming. Attentional
difficulties (e.g., Attention-Deficit Hyperactivity Disorder) were
identified as a barrier to managing treatments independently (e.g.,
remembering to take medication). Parents highlighted the role of mental
health in a child’s ability to manage CF independently (e.g., treatment
adherence was poorer when their child experienced low mood).
Coping
Focusing on positives
Participants described children coping with their CF by focusing on
positive aspects of their lives. Understanding that they may be able to
access effective treatments if their condition worsens was described as
helpful in coping with the uncertainty of their disease progression.
Other positive aspects identified included participating in fundraising
initiatives and becoming a leader in the CF community.
Learning to cope from others
Participants reported that sharing with others and learning how to cope
from other people is helpful. Children described talking with their
parents about feelings associated with CF as a coping strategy. Parents
highlighted the importance of creating an open environment and
encouraging children to share how they are feeling. Parental modelling
of helpful coping skills was discussed as being important to promote the
use of helpful coping strategies in their children. HCPs emphasized the
pivotal role that parents play in teaching their children about emotions
and effective coping during difficult situations. Children added that it
is helpful to know there are other people with CF who have similar
experiences.
Bridging gaps in services
Services needed
Participants reported that the current major focus is the physical
aspects of CF within care, while mental health care is not prioritized.
Some HCPs described mental health care for children with CF as being
reactive instead of preventative and how mental health services are not
accessed until there is a crisis. Participants stressed that children
with CF need opportunities to access mental health care consistently.
Additionally, participants highlighted the importance of offering mental
health services to other family members, such as parents and siblings of
children with CF.
Barriers to access
Barriers to accessing mental health services included financial
barriers, the time-consuming nature of attending appointments, long
waitlists, and travel to access services for families living in rural
areas. HCPs added that parental beliefs about stigma associated with
receiving mental services may prevent children from accessing the
services that they need. Education surrounding mental health care and
normalizing the experience of seeking out mental services was believed
to be important in eliminating stigma as a barrier for accessing
services.
Informing a novel form of service delivery
All participants expressed interest in an Internet-delivered mental
health prevention program for children with CF. Participants emphasized
the importance of children learning appropriate coping skills early to
promote well-being. Potential drawbacks to this type of service delivery
included safety concerns regarding Internet use and access to the
Internet. Program usage or uptake could be impacted by time commitment
required and HCP monitoring.
Finally, participants suggested components to be included in an
Internet-delivered mental health program include education about CF and
CF treatment, physical and mental health, emotions experienced by
children with CF, coping strategies, how to access mental health
services, and social support provision. Interactive aspects (e.g.,
interactive vignettes) and short modules to accommodate attention
difficulties were also recommended.